Long Awaited Article - The Best Thing - Now Seldom Have Severe Pots Or Mcas

[issie]

http://www.termedia.pl/Journal/-76/pdf-23697-10?filename=putative%20biofilm.pdf/

(This is a pdf download version.)

I haven't posted in awhile because I was waiting for this article. Dr. Fry has been trying to get his research published. There is so much red tape to go through to get the information out there.

Many of you new ones don't know me. I haven't been on forums very much in the last few years. It's hard to believe it has been 2 years since I first wrote about finding out that I have a co-infection to Lyme and a protozoa that is newly discovered. Dr. Fry has been doing research on this protozoa and has connected it to many hard to treat illnesses. I'm not his only POTS patient either. There are several of us and some of us have had good results. One of Dr Frys patients is also a doctor. He was so sick with POTS he was bed bound and had to stop practicing medicine because of his POTS. He is now back practicing and rides his bike thousands of miles a year. He also tells all his patients to do the diet that has changed our lives.

First I'll tell you what all I know I've had. (For those that don't know me.) I've had this since I was a young child and am now in my 50s. It is also in my family. I have two nephews with POTS, and we think my neice. My sister has CFS and OI. My grandmom had POTS (we think). My mom had MCAS (we think). I have HyperPOTS with high NE levels and mostly high bp that would drop me into a more normal range. When this would happen I would feel very dizzy and faint. (Thankfully, I only fainted twice.) I also have MCAS that landed me in the hospital with my heart and what appears to have been Kounis Syndrome. I have EDS and FMS. (I wonder if these are not one and the same.) I also have vitiligio and alopecia. At one time tested positive for Lupus. I have Hypogammaglobulinemia and no immunity to pneumonia. I have/had Chronic Kidney Disease that was at stage 3 (I almost don't even have the markers for that any more. I'm at the high end of stage 1.) I have/had a coinfection connected to Lyme and this protozoa. I also have mutations in my methylation pathways connected to MTHFR and other genes connected with that.

My improvements have been - seldom does ANY of these illnesses stop me from living my life. Everything has improved. I'm not totally over any of it. But, I'm mostly GOOD these days - instead of mostly BAD.

What I have done is address my immune system and inflammation. The biggest key to this is DIET. I'm a whole food, plant based, starch based, LOW fat -----VEGAN. That means NO ANIMAL products and very low fat. I try to keep my fat under 20 grams a day. Dr. Fry found that this protozoa loves fat and it allows them to remain alive and happy. Which makes me sick and unhappy. I have noticed a big difference with this. When I splurge - I can really tell in how I feel. I also was not to supplement with magnesium. Magnesium keeps the biofilm that the protozoa, virus and bacteria live in ----very strong and houses them In a shield to keep them alive and well. Yes, we may be low in magnesium because it is being used up by these "aliens", we dont want. Dr Fry hopes this will balance out with a better management of these invaders. Sadly, however, there is no known cure to completely erridicate them. We just have to try to get our immune system to do the best it can to keep them at bay. It is not known if these can be spread from mother to fetus and with sex or not. (It is thought that Lyme can be spread. This protozoa is similiar to malaria and that can also be spread.)

There is no MAGIC PILL. The one thing we learn from our family, for generations, is dysfunctional eating habìts. A good bit of our immune system is in the gut and we have to address it at that level. The one thing we have complete control over is what we put in our mouths. I feel, food and alternative supplements can be the epigenetic answers we are searching for.

Dr. Fry has has me using low dose Doxycycline and anti-malarial herbs. At least two hours before either of those I use Lumberkinase that helps to break down biofilm so that those two things can do their job. I also use a good probiotic and use other supplements. For most of these two years Ive also been using GastroCrom, this helps me alot with my MCAS issues and addresses my immune system at gut level too. I still using Allegra and Zantac nightly.

I'm going to list the threads where we talked about this in the past. The one is very long and has a lot of listed reference materials. The first post here, as far as I know, is the longest one that DINET has had - at least since I've been a member. It is rather heated, some were not as open minded as I was to the possibility of this as being a cause. But, here it is. If you want to read the newest post first, start at the bottom and go up. If you want to really understand the reasoning and science - read the reference materials.

This was really thinking out of the box when I first presented it. I had a lot of push back. But I'm glad I stuck with what made sense to me and it worked. I feel like this saved my life - LITERALLY. I dont think I would still be alive had I not found this and took it seriously and did it to the best of my ability. I feel like this was a miracle for me. Im not 100%, but I have my life back and I HAVE A LIFE. Hope this helps some of you too.

Issie

http://forums.dinet.org/index.php?/topic/22047-new-doctor-new-ideas-could-this-be-the-answer-or-at-least-a-part-of-our-puzzle/

http://forums.dinet.org/index.php?/topic/23855-interview-could-this-be-one-piece-of-our-puzzle/

http://forums.dinet.org/index.php?/topic/24079-good-news-improvements/

EDIT 2016 - I found that I am getting calcification in soft tissues. Research shows two things that could cause this. One is not using Vit K with Vit D. It helps keep the calcium in the bone. The other is lack of magnesium which moderates calcium. More current research on Lyme shows that yes biofilm does use magnesium to get stronger. But it also uses calcium and iron. Another Lyme doc I recently read about feels calcium is more an issue than magnesium. So knowing that my body is showing signs of a magnesium deficiency and too much calcium - I'm using transdermal magnesium spray a few times a week. Can't say that I feel any different, but maybe it's helping to get calcium more in balance. Also, added Vit K to my supplements. Another interesting note is Vit D can be low in your body to try to adjust too high calcium. If your calcium is high, likely Vit D will be low. It's a self regulating thing. I stopped mega dosing Vit D, it just wasn't coming up with more and now I think I know why. 

EDIT 2017:  Dr. FRY went into research only. He no longer sees patients. He has now decided that what he had felt was a protozoa is a mold/fungus. It does still form biofilm. He is addressing it more with antifungals.

I've gone down a different path with a Shoemaker/Klinghardt trained doctor. There is a lot of testing that can be done for mold/fungus. And there can be genetic markers that will make one unable to throw this off.  I'm positive on all testing done, so far. My new doc is Dr Jennifer Smith in Scottsdale, Az.  If you see her tell her I recommended her.  She is fabulous! 

Issie

Edited July 25, 2017 by issie
update of info

[issie]

I bumped up the other articles

Issie

[Xhale1991]

Hey issie thank you for sharing.

Would you mind telling me what symptoms you had that have drastically improved through this regimen?

I tried the low fat vegan thing for a few weeks. I'm pretty skinny and wasn't able to keep weight on while doing it. It also gave me terrible bloating and made my anxiety terrible. I'm willing to give it another shot though after reading this.

[issie]

Everything!!!! I had at one point with this illness been chair bound. My tachy was severe and I had very high NE levels as a compensation to improve blood flow. I had severe edema and blood pooling. Was naseaueous a good bit of the time. Had IBS and trouble with elimination and digesting foods. (No problems with that now.) Was overweight with insulin resistance. I had bad brain fog and was worried I was getting dementia. Forget standing, shopping or singing. I had tremors throughout my body. With tachy came severe anxiety feelings. High NE can do that to you. My bp swings were drastic and tachy happened constantly. Part of that was MCAS related. Turning over in bed could set that off. I had shortness of breath at times and feelings of near faints. (Now, I can sing again. But still have to sit to do that. Before I couldn't sing as it would activate my sympathetic nervous system.) I can swim and ride a bike and shop without having to ride a cart. I can travel now and it doesn't totally wipe me out. I'm trying to just give symptoms of POTS. All the other things I listed above have their own set of symptoms.

As for weight, I needed to lose. You have to do this diet smart. You MUST get enough plant proteins. I use an app to keep up with my proteins and fats called SparkPeople. It is free and has been very helpful. Carbs are what give us our energy. Without them we have fatigue. When I converted over there was an adjustment period. My body had to get used to the additional fiber. I had to get used to different foods and learn to like some of them. My taster has totally changed. There also is a die off if there are these pathogens. It gets worse before it gets better. You can read up on what is called a "herx". It is not pleasant, but very necessary. You may think you are reacting to something - but, it could be the die off. The diet that Dr Fry guides his patients to is Dr McDougall. He has a web site you can get more info from. He also has several books. I also like Forks over Knives and Dr Gregor and Engine 2. I keep up with the info they put out on their sites. It keeps me motivated and going in the right direction. There is also a book called The China Study that shows how this lifestyle is healthier for us.

Know that any time you drastically change a way of life, there is an adjustment period. You can't do it perfectly. And your body and mind have to adjust. You've spent a lifetime of doing things a certain way - all that's gotten you is SICK. To have a change , there has to be a change. No one else can do it for you. It takes determination and being ready in your mind that you want things to be different. The work starts with us. We have to be willing to do it. There is NO MAGIC PILL.

I had a very hard, trying and emotional year. I was a caregiver to both of my parents. Both of them at their home to start with and then in seperate nursing home facilities. I had to try to be there every day for them and manage their care with hospice. Both my parents died within two weeks of each other. I was away from my own home and hubby to do this. I also managed their house and affairs and my own. I came close to crashing. But, never did all the way. This was 10 LONG and painful months. I would have NEVER been able to do this before. I know this has made a HUGE difference for me.

Issie

[issie]

There are a few supplements you must use if you are vegan. B12 and iodine - I use kelp.

[Xhale1991]

Thanks for the response.

What about salt? How do you make sure you get enough sodium in? Or do you find that high sodium intake does not help you?

[issie]

If you do a search on the forum, you will see what I think about salt. I don't salt load and I don't agree with most of the traditional POTS suggestions.

Issie

[valiz]

I well remember you Issie. I often wondered how you were doing. Thanks for the update. Best wishes as you continue your journey. Keep on sharing your experience with us. Liz

[issie]

Thanks Liz!

I hope you are doing better too. I've been off the site for a pretty long time, so haven't been keeping up with everyone.

Issie

[Psalm 23]

Hi Issie,

I'm so happy to hear that you have continued on the road to improvement. How exciting and inspiring. I think of you quite often and am so thankful to you for your perseverance in educating physicians about MCAD and treatment. It's made a huge difference in my life.

Janet

[issie]

So happy to hear that Janet. I'm glad my efforts with the docs are paying off for others. Makes me glad to have been an aid to learning and discovery.

Issie

[Psalm 23]

I finally had a chance to read through the articles. Thanks for posting them Issie. The information presented is very interesting but rather disconcerting for those positive with that protozoa considering it's permanence at present. Certainly one can see the impingement on blood flow those biofilms can potentially create. How fascinating that the researchers/physicians were able to determine that the protozoa thrived on fat and that a low fat plant based diet could result in an improvement in condition. It will be interesting to follow new research coming out of this.

In addition to continuing with a vegan diet for life will low dose antibiotics and antimalarials ( herbal or otherwise ) be long term necessities ? Is Dr. G. open to any of this ? I just wondered how open minded he was. I also believe that many patients diagnosed with FMS have EDS, which could be the source behind the pain. I'm sure there are a number of different subtypes. There is of course the connection between MCAD and fibro and then there is the large percentage that actually have small fiber neuropathy.

In any event I'm very happy for your improvements. I have been on a very long journey as well and am now seeing light at the end of the tunnel.

Janet

[issie]

I'm not sure about how long antibiotics and antimalarial support will be needed. I tried to stop the antibiotic and antimalarial herb, but had to go back on them. I've been doing this for 2 years now. Since, at this time, there is no way to erridicate the Protozoa, the diet is absolutely imperative. It makes a huge difference. One other med Dr Fry uses is Plaquinol. I have not used this one. He said I could try curcumin instead. I was not able to use it, it initiated a herx with me - that was too intense. I went back to turmeric and ginger. He also wants me to eat lots of papaya. That helps break down proteins.

Glad you can see the connections. I hope it will help others.

As for Dr G - I haven't seen him in a long time. I should call and give him an update. I would think if anyone with as bad of a history as mine could improve - he should be interested to know what helped.

Issie

[writerlymom]

This is great news, Issie. I remember reading some of your posts when I was browsing last summer. So glad you're feeling good.

[issie]

Thanks :-)

[Xhale1991]

Im going to give this diet a shot.

Can you give more detail on what exactly you eat?

[issie]

I'm lowfat, whole food vegan. The diet my doc has me using is by Dr McDougall. You can look him up on line and he also has written some books. I like to listen to his site and I subscribe to a few other sites that keep me motivated. I like Dr Gregors site as he is all about science and explains WHY this diet works. I also like Forks over Knives. The idea behind the name is we can avoid the knives of surgery if we change what goes on our forks. I also like Engine 2 and his dad's discussions who is a heart doc, Dr Esselstyn. There is also a book written by Dr Campbell called the China Study. There are many other doctors who are pioneers and advocates of this lifestyle. These are the ones I follow and listen to. This way of eating is not something new. It's been talked about way before some of the other eating styles. There is a lot of science and people proving the science of its value. It's working for me.

There are a few supplements that you need if you do this diet. I supplement with Vit D, iodine in the source of kelp, and Vit B12.

To keep in mind in regard to the biofilm - I'm not allowed to supplement magnesium. It increases the integrity of the biofilms and it fuels the growth of this protozoa. My doc has found that most all his patients are low in magnesium. He thinks it will balance out with the lowering of the pathogens that are using it up. But for awhile he has found we have to be low in order to try to lower these organisms. I haven't really missed it as a supplement. I think I get enough in my foods. The idea is to get your nutrients in your food and not need to supplement. If we eat healthier and get them in a whole form and not syntheticly broken out, our bodies should assimilate and use them more effectively. That being said, I still use some supplements, but not every single day. I use them a few times a week.

Remember there is an adjustment period and a detox that will happen. You feel worse before you feel better. If there is a protozoa there could be a herx reaction and that is VERY uncomfortable. But it helps you know you are going in the right direction.

I use an app called SparkPeople that is free to keep up with my protein and fats. You must have enough protein or you won't feel satisfied and you could lose to much muscle. Starch from a whole food source is vital for energy. And keeping your fats low is the other key. You need some fats, just not as much as most people have.

Issie

[issie]

Still believe in this. It sure makes a difference. Still finding the key to be low fat. He told me today that I dont have to count the fat in a whole vegetable (except for things like avocado and nuts - which are mostly fat). Those you can have, but no more than 20g of additional supplemental things. Nuts for example is a garnish. Limited in amount. If you have another splurge (chips or a food bar) you count the fat grams and dont go over.

There is another paper under review. I will post when its available. It will be very interesting to POTS people.

Issie

[issie]

EDIT 2016 - I found that I am getting calcification in soft tissues. Research shows two things that could cause this. One is not using Vit K with Vit D. It helps keep the calcium in the bone. The other is lack of magnesium which moderates calcium. More current research on Lyme shows that yes biofilm does use magnesium to get stronger. But it also uses calcium and iron. Another Lyme doc I recently read about feels calcium is more an issue than magnesium. So knowing that my body is showing signs of a magnesium deficiency and too much calcium - I'm using transdermal magnesium spray a few times a week. Can't say that I feel any different, but maybe it's helping to get calcium more in balance. Also, added Vit K to my supplements. Another interesting note is Vit D can be low in your body to try to adjust too high calcium. If your calcium is high, likely Vit D will be low. It's a self regulating thing. I stopped mega dosing Vit D, it just wasn't coming up with more and now I think I know why. 

Issie

[issie]

I'm bumping this to go with another comment so it's easier to find. 

Other issues that some POTS people may not have considered is mold/fungal issues. I had a 3rd thyroid biopsy and they found a type of mold/fungus that causes tumors in the body. They thought it had turned into cancer, but didn't find that at all. Treating mold and doing detoxing is making a huge difference all the way around. They are starting to wonder if this fungus /mold may be connected to my meningioma  (brain tumor).  I'm hoping the detox will eliminate the tumors and I won't have to have any surgery for them. Time will tell. MRIs have to be done yearly now as both were growing. We will see if what I've been doing has helped. At least it is with my POTS. 

Issie

[issie]

For those who have been following me and know about what I've been pursuing - Here's some more information that has been learned. 

http://www.ncbi.nlm.nih.gov/pubmed/28411089

(You may need to copy and paste the link to go to the pubmed article.)

Dr Fry, Doctor/bioscientist - who found Protomyzoa Rehumatica - now has determined it's a type of mold/fungus. (We found it in my thyroid biopsy.) He just got a peer reviewed paper in Pubmed. He has determined that with us, who have issues with it, there is a genetic flaw and we don't have a certain protein to break this mold down. It can cause tumors, cancer, atherosclerosis and a host of other issues. He is going to stop seeing patients and go into lab only, for now, to try to develop a protein for us to use so our immune system will keep it in check. It will probably be a number of years before that will be available. 

I asked him what in the meantime. He said to keep with my herbs. I seem to have it under control. But we are going to see if an antifungal may help more. He has found using an antifungal along with Doxycycoline gives his best results. 

Exciting times ahead. I stick to what I've been saying forever --- Genetics/Epigenetics, autoimmune and inflammation. If we could get that "fixed" we'd be "Healed".

Issie

[issie]

It's sort of odd feeling, posting this last finding. Sort of feels like closing a chapter - to a now complete book. Doing what I've been doing is making such a huge difference for me. 

I did modify my vegan diet to be mostly vegan and added back in occasionally some meat and cheese. But still mostly vegan.

I also found that I needed to add magnesium back. It's a  calcium channel blocker and I think there are some sort of issues there with the mast cell. GastroCrom being a mild calcium  channel blocker as well as a mast cell stabilizer. I take it a few days a week. 

I'm very conscious of using enzymes as a biofilm moderator. And use a lot of herbs for blood thinning since finding Lupus Anticoagulant  (too thick blood with APS).  Also using herbs for mold/fungus. 

Also find supporting choline and upping acetylcholine levels a huge help with brain fog and energy. 

I'm doing better than I've done in a long time. Hoping to continue in a positive direction. 

I'm not on forums much any more. But thought some may appreciate an update on this subject. It's had a lot of views - especially the initial post about it on this site - New Doctor - New Ideas.

Issie

 

[issie]

 

Okay, just back from seeing Dr Fry for the last time before he retires from seeing patients.  He feels this mold/fungus is what's creating most of my issues. It is similar to Valley Fever and goes everywhere into every organ. He is treating with Doxycycoline and Diflucan.

His research has found that magnesium, most B vitamins (including Methyl Folate --- only safe one is B12), and Fish Oils feed it. May be why I have more thyroid tumors, as I had started using those things. He said to be careful of minerals too. But didn't tell me to stop taking zinc or chromium - so hope those are okay. Only use a few times a week.

He feels I didn't herx with the Doxy the last time because of the magnesium. It's obvious I have issues. Feet were purple in his office and he pointed this out to me. Brain fog is awful. He said I'm not getting good enough blood flow or oxygen. So making changes. He really feels being as close to vegan is better. But I felt like adding meat back a few times a week gave me more muscle strength.
So there's the update.
Issie

[issie]

New direction now, seeing a Shoemaker/Klinghardt trained doc. Addressing CIRS and MARCONS.  Love her -----Dr Jennifer Smith in Scottsdale,  AZ.